People still believe that clefts are caused because of karmic reasons: Susannah Schaefer

We are operating on almost 50,000 children a year here. This covers the 35,000 clefts that are estimated to be born every year in India plus that backlog which we are still estimating is that approximately one million children.Shahid Akhter | ETHealthWorld | January 27, 2017, 09:03 IST

In an interview with ETHealthworld, Susannah Schaefer, CEO, Smile Train, New York, talks on how Smile Train has been successful in providing affordable and accessible cleft care in India and globally. Edited excerpts:

Why did Smile Train choose clefts as a focus area?

Cleft lip and palate is a problem that is affecting 170,000 births every year around the world. When we started out in 1999, there was a tremendous backlog all around world.

We worked to build an operating model which would build sustainable medical capacities. By providing the funding, the resources and the training to the local doctors in their own communities, we started Smile Train to heal clefts across India. Through this support, we helped doctors treat children with clefts in their own communities.

What are some of the key regions for Smile Train?

Our largest program is here in India. We have treated over 450,000 children in India since we started in the year 2000. In North Asia, especially China, we have a large program as well where we have treated over 350,000 children.

We also have programs in Africa, Central and South America, South- East Asia, and in many communities in the Caribbean. Haiti is another growing program for us around the world.

What are the biggest milestones for Smile Train so far?

In 2014, we operated on our one millionth patient, giving him a new smile and a new chance at life. That was probably our largest milestone that we recently achieved. Another was being able to provide training and resources to doctors by developing the Virtual Surgery Simulator to expedite training and leveraging technology to train more surgeons at a faster pace. This is a free to use online software which creates a 3D simulation of a cleft surgery and also assesses the virtual surgery.

This award-winning technology provides users anywhere in the world with essential information about cleft anatomy and surgical techniques for cleft lip and palate repair using interactive animated graphics, clear written and oral instructions and actual intra-operative surgical video footage.

How does Smile Train raise funds?

Smile Train’s funding comes from private donations, from individuals and foundations. We do not take any government funding, so it’s the caring people and communities who have been supporting and helping us, and want to help the children born with a cleft, around the world.

We’ve been able to build a fund raising program and install accountability so our donors know where their dollars are going and how they have been changing lives, changing communities at large and giving children a second chance at life.

What are some of the key challenges in India?

In India, the primary challenges are transportation, mobilization of patients and awareness. In rural communities, due to limited communication, people continue to be under the impression that clefts are caused because of karmic reasons etc. These superstitions and myths need to be busted by educating people and informing them about Smile Train where they can receive required support. There is no pay-back; there is no funding on their part. This is out of the kindness of private individuals who want to help them and give their child a new chance at life.

How does Smile Train make cleft care affordable and accessible in developing countries?

We work so hard at communicating that the service that Smile Train is providing requires no pay back from the families. That is what our number one goal is. It is to get that word out and be able to provide safe and quality surgery to the children.

In India, of course we always want to reach more children. We are operating on almost 50,000 children a year here. So that covers the 35,000 clefts that are estimated to be born every year in India plus that backlog which we are still estimating is that approximately one million children. So expansion is helping as many children as possible.

We are also fundraising locally now and when we think about how far we have come since 2000, that now we are having operations and private individuals here in India, contributing to Smile Train’s programs and taking care of children in their own communities, it is really wonderful. So we hope to continue so we can continue to help children at a faster pace.

Would you continue to focus on clefts only?

When we started in 1999, we had one focus and that was on cleft and palate and we will continue to have that focus. Our goal is to be able to provide holistic care to the child, which also looks at ancillary care such as orthodontics and speech therapy. So we look to build cleft centres here in India, where we can provide those additional services, make them more accessible especially in the rural communities. So that’s part of expansion but absolutely focused on cleft lip and palate.